Chelsea's tumor

[chelsmom]

Hi... I'm new here and need some support and help.  My 17 year old daughter was diagnosed 6/9/06 with a possible acoustic nueroma 41/2-5cm X 4cm.  When I say possible that is because the neurologist said that he thinks thats what this looks like on the MRI but wants the neuro-surgeons to confirm.  He said in his 30 years of practice that he has only seen this twice in such a young person and never one this size.  Of course we were all in shock.  It is located on the right side with what looks like a small finger coming off the tumor into the ear canal and the other side of the tumor pressing against the brain stem.  We were first refered to UCLA and have an appointment on Thurs. 6/15/06.  Has anyone heard of a tumor this size in a teenager???  She has had headaches for a couple of years but was told they were tension/stress induced which with her drive was understandable.  Last fall she saw the doctor for dizziness with the headaches and was refered to neurology.  Months later when the appointment time was here she said she hadn't had much of a problem with the headaches or dizziness so we rescheduled assuming that these were still from tension.  Her appointment was last Wed. 6/7/06.  By then she had been experiencing more dizziness and continued headaches.  A couple weeks before the appointment she started hearing a whooshing sound and blurring vision.  At the appoinment her doctor saw intra-cranial pressure and she was scheduled for an MRI 2 days later.  That brings us to the diagnoses.  We are terrified.  She graduates from high school tomorrow and has been trying to keep herself as busy as possible with all her friends and activities.  What kind of questions should we ask that I might not know to ask?  Has anyone been to UCLA neuro-surgery???    Please let me know.....Thanks     Chelsmom

[Raydean]

Hi Chelsmom

I'm glad that you found us, but sorry that you are going thru this.  We will keep Chelsea and you in our thoughts and prayers

The most important factor that will make a difference is the experience of the treating medical team.
All neurosurgeons are "qualified" by their medical degree, but this does not mean that they have the experience needed to ensure a positive outcome, especially with a large tumor such as your daughter's. The difference could well mean quality of life issues.

Are you aware that you live near a regional center of excellence that specializes in the treatment of AN's?  (I'm assuming that you live in the southland based on your reference to UCLA)  The House Ear Clinic is world renowed for it's treatment of AN's and would have the experience needed to ensure the best possible outcome.

Normally these tumors are found at a much smaller size allowing plenty of time to research.  But with very  large tumors problems can come up more quickly.  Please watch for any changes such as decreasing balance, more episodes of blurred vision, with headaches as they are symptoms of fluid build up. 

Questions that I would ask the UCLA doctors would be

How many AN's do you treat yearly, total practice?  ( you want to hear that the doctor has treated hundreds of AN's)
What percentage does the treatment of AN's comprise out of your total practice?
What is your hearing preservation rate?
Facial preservation rate?
other complications rate and quality  of life issues?
How many tumors have you treated in the range of Chelsea's and what were the outcomes?
How does these numbers compare to a regional center that specializes in the treatment of AN's?
Lastly, if all things were equal and this was your daughter, who would you have treat her?

Please keep us updates as this continues to unfold.  Know that we're with you in spirit.
Hugs
Raydean

[chrissmom]

Hi Chelsmom,
I'm Christopher's mom (chrissmom).  Chris is a 22 yr old college student who attends Penn State.  He was just diagnosed with a 5 cm tumor about 6 weeks ago. I never heard of acoustic neuroma until then.  On an MRI, the tumor looks exactly as you describe.  He had no symptoms, not even a headache.  He had a V-P shunt put in a month ago because of Hydrocephalus.  It's important that you check for that.  You don't want that spinal fluid to build up in the brain. After shunt surgery, we felt the full effects of the tumor.  His balance is so bad now that he needs a walker, his face is drooping a little on one side and his speech is beginning to slur.  This has shocked us too.  He was active and bubbly.  A doctor told me that these tumors are sometimes more aggressive in younger people.  I think that is what is happening here.  He claims he could hear at Thanksgiving.  Chris' tumor surgery is Thursday. I'm scared too.

[Battyp]

HI Chelsea's mom sorry you are here joining our exclusive group.  Please know we are here to help in anyway we can. 

Raydean lists the best questions to ask your treating doctor and I've been told that the average doctor only sees about 30 to 50 of these in their 30 years of practice so you definitely want to find someone who's seen more than the average!
My son had a girl in his school who had surgery for an AN the same time I did and she bounced back a lot quicker than I.  She was back to school second semester doing ok with some balance issues.  I think she missed half the first sememster.  You can get copies of your MRI and reports and send them to house or other places for consultation over the phone.  My prayers are with you and your family at this time.

Michelle

[Jen Doane]

Chelsmom,

I was 17 when I was diagnosed with my AN.   I was also one month away from graduating high school.  My tumor was on the left and was 4.5 cm roughly the size of a golf ball.  I am now almost 36 and I am new to the forum.  In the 17 years since my AN experience the medical advancements have been tremendous.  I'm not sure I can offer you any medical info support due to the time laps since my AN.  However, I have found that others on this forum are well versed and knowledgeable on today’s terminology and treatment of AN's.  Use this resource to it's fullest.  When I was ill all my parents had to work with was the information received from the Dr’s.

I feel for your daughter and know exactly what she is going through.  I will keep her in my thoughts.  She will prevail!

I was treated at the House Ear Institute in LA.  Their staff specializes in AN’s.  People from all over the world are referred there for their AN treatment.

Best of luck and congratulations on her graduation!

[ppearl214]

Hi Chelsea's mom,

I cannot offer info about going through the surgery, but I do know that in S. CA, House Clinic at St. Vincent's is the way to go. Many here will attest to their dr's, their leadership in AN surgeries, as well as the care they received there.  They do phone consults (I did one with them as well) and they are truly the best of the best in AN surgeries in that area.

Am sending Chelsea, you and your family the biggest of hugs and lending lots of support to you all. And please... please congratulate Chelsea on her graduation!  She truly does have a future to look forward!

================================================================================

Chrismom, please give Chris my best wishes and I know he's going to do great!  Please keep your chin up as best as you can. I may not be a mom (heck, at 45 yrs old, I could be anyone's mom!) but I know that you need hugs as well. My thoughts are with you all this week.

Phyllis

[chelsmom]

Thanks everyone for the information, your thoughts and prayers.  Chrissmom...I'm so sorry for you and Chris.  We will be praying for you.
Chelsea seems to be holding up physically with the exception of a delay in her left eye when she blinks.  They put her on decadron to try to reduce the swelling and she has noticed a decreased noise level in her right ear.  She and her friends have noticed how nice her complection is and the nurse told her that is a side effect. One positive.  She has no idea about the possible after effects of the surgery.  I told her about the terrible headaches, increased dizziness, balance problems, and nausea that can come about but nothing about facial nerve complications or any of the other scarry stuff I've read on the net.  I just want her to get throught tomorrow with the most positive outlook as possible.  She wants to get the surgery going ASAP so she'll be fully recovered before school starts in Sept.  I will feed her information about all this slowly between now and Thurs. appointment before the doctors tell her.  I'll also read her all your encouraging remarks to keep her spirits up.  UCLA comes highly recomended by many of our friends that are doctors and some friends that have experinced the center themselves.  We were first refered to a different hospital but after e-mailing the MRI pictures to two other neurologist we got the same recomendation....UCLA.  We will make sure first about the experince and how it compares to the House.  I feel that we don't have time to waste because of the size.  Her doctor will be Dr. Donald Becker who is the dean and head of the neuro-surgery dept.at UCLA.   Right now we have great faith in him based on our research.   But again, we will ask all the questions.   Thanks again

[tony]

Note to Chelsea`s Mom
I saw your note - these must be troubled times for  you
Definately get a second opinion - and a third if required.
Despite the large support group here, these things are actually quite rare and the Doc was trully being honest in regards his own experiance.
I second all the notions that experiance either in MRI interpretation or surgery/treatment
for ANs is most important - go with the people who know.
Correct diagnosis is everything here.
Once you have confirmation of what you are dealing with, you can start to consider
what, and when, to do something about it.
Best Regards
Tony

[ppearl214]

chelseasmom

Please give Chelsea a hearty congrats on her graduation today! What a day for you  all! 

Pls hang in there... and hugs to you all!

Phyl

[TaylorsMom]

Hi Chelsea's Mom, 

I know exactly how you feel.  You can read my post to ChrissMom this morning.  My daughter was also 17 when diagnosed in January.  We also didn't know for sure it was an AN till after surgery.  Yes they are pretty rare in teens but it happens.  Hers was 4.8 cm. and very bloody.  Of course hearing is gone on right side and she is dealing with facial paralysis, balance issues, impaired coordination, etc. 

I'm glad you found us here.  This forum is great for info and support.  You are not alone.  Best of luck to you.  Keep us updated.

Kathy

[Battyp]

Chelseas' mom decadron can be a wonderful drug as I truly believed it saved my life..one of the downfalls is weight gain and moon face which happens the longer she is on the drug.  So if her pants start to get tight and she gets discouraged remind her it is a side effect and will go away after she stops taking the meds.  Just remember to wean off the drug and not to stop cold turkey! 

Congrats on her graduation!  Is she starting college in the fall?

[Sue]

Hi

Thought I'd get my two cents in here too. I'm so sorry to hear of these youngsters (Chelsea and Chris) getting an AN.  Such a discouraging way to start out your young adulthood.  Most especially when appearance is EVERYTHING to these kids, and the outcome can certainly mess with the outward appearance.  But, they do have youth on their side and they are probably going to heal so much faster!  I had the Gamma Knife, so all I can tell you about is the Decadron.  It does it's job very well, but there are side effects. I don't know her dosage and such...but a common side effect is insomnia.  I only took it for a week, but it was a looonnng week!  So if Chelsea is wandering around the house at 3 a.m., that's the reason!! I'll be thinking of these kids and wishing both of these families the very best outcome from their surgeries.  Be sure to tell them that Mark Ruffalo, the actor, has had AN surgery.  They probably know who he is.  He has single side deafness now...but he looks like he is doing great..walking, talking, acting...back to his normal life!!  Which I'm sure these two young people will be doing also.   

[chelsmom]

Hello to all and thanks for the congrats and support.
battyprinces... thanks for the heads up on decadron.  She is looking forward to starting the first week in Sept at the University of Redlands.  She wants this process moved along so she'll have a better chance of recovering in time to go.  

Taylorsmom....How is she doing. How are you doing?  Congrats to her for getting all her studies done while going through this terrible time and walking with her class.  I am truly amazed at the courage these young people have.

Chrissmom.... I've been thinking of you all day.  Our prayers are we you.

[Joef]

I can say I'm looking at the whole AN life differently than if I was young again ..

I'm 41 .. and married , and don't really care what I look like (my wife would feel differently!) ..as long as am neat and clean ... so what .. and that's part of the reasoning I got a BAHA, because I'm not bar hoping anymore like I did when I was 20 (my parents almost put me in AA when I was younger )... I think the facial problems and BAHA would of hurt me emotionally much harder if I was 20 and single again ..

[chrissmom]

Thanks everyone,
Christopher's surgery is scheduled for 10 AM in Pittsburgh.  He says that he doesn't want Big Ben(Steeler Quarterback) for a roommate.  Too noisy...  Joef, I think he'd rather be fishing too.  He loves to fish.  He's hoping that after his surgery, he will be able to fish from our boat or the dock.  Can you imagine the balance situation there !  I'm hoping they can remove the entire tumor tomorrow but they have prepared us for a staged operation with the next one in July.  I'm comfortable with his doctors.  They are an excellent team and both worked at House. Dr. Arriaga is rated among one of the best doctors in the country.  They have done many of these operations and skull based surgery is their practice. Thanks for all your thoughts and prayers.  I'll have lots of time tomorrow to pray for all of you.